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Thursday, 16 February 2012

Creating Your 'Dream Team'

I've just read a book called Living Well With Gastroparesis, by Crystal Saltrelli (who has a wonderful blog). It's full of great information and advice about gastroparesis, and the general tone of the book is really positive. I didn't want to put it down!

One chapter that stood out for me was about creating a Dream Team of healthcare professionals. This is something that I've been working on with my GP - finding and bringing together a team of people who can help me with all my various medical conditions and can work together to help me to live as well as I can with the conditions that I have and the symptoms that I experience on a daily basis.

I absolutely love Crystal's term, 'Dream Team'. I want to have a Dream Team looking after me, and I want to be a member of this Dream Team. This is not just about healthcare professionals making decisions about me; this is my life, and I have to make the most of it.

I don't really want to talk about the whole Dream Team. After all, people with different conditions may have totally different needs. Today I want to talk about three members of the Dream Team, relevant to anyone with a chronic illness.

The first and most important person in the Dream Team is you. You are the reason that this team exists, so you need to be motivated. I've written before, and will write again about getting organised and about treating your healthcare as seriously as you would treat a full-time job, so I'm not going to go into details of that here, apart from a few key points:

Plan: Get information about your condition(s), your medications, possible treatments, and good doctors/nurses/therapists in your area. Don't be afraid to ask for recommendations from friends, or online from other people with your condition.

Keep good records: This is really worth a whole post on its own, but keeping track of the reports that you get from the people that treat you, test results, as well as your own records of symptoms, anything that you measure (e.g. blood sugars, peak flow, weight), is invaluable. You are the only person that has all of this information!

Have clear goals: 'Getting better' is not specific enough. Creating goals is a particular skill, and one that I'm still learning! The more specific you can be with your team about what you want to achieve, the easier they will find it to help you, and the more motivated you will be because you are working towards something.

Every Dream Team needs a good primary care physician - someone who is able to coordinate things for you. This person might be a GP or they might be a specialist, depending on your situation. For me, it's my GP, as I have at least two 'main' conditions that cause all the other problems. Having a respiratory physician as my primary, for example, would be totally unsuitable for the orthopaedic problems, and vice versa.

GPs, as the name suggests, are generalists. This is their biggest strength, in my opinion. However, even generalists have special interests, and it may be worth asking at your local GP surgery to find out if any of the doctors have special interests in diabetes or asthma or chronic illness in general. At my local surgery, there is one doctor with a special interest in chronic illness. Unfortunately, she only works part-time during the week and not at all during school holidays. I started to work through the other doctors in the surgery, never specifying which doctor I wanted to see, with some funny and some disastrous results. Eventually, I found a fabulous doctor after a recommendation from a local friend. She works five days a week, and the standard two-week wait for a routine appointment is worth it to me!

So, what is this person's role within your Dream Team?

Firstly, a word of warning: even the most wonderful GP won't be able to do all the hard work for you. You still need to take responsibility for lifestyle changes, keeping good records, taking your medications, and contacting your doctor if you need advice or if you notice a deterioration in symptoms.

What your GP can do (with your help and co-operation, of course):

Arrange regular screening checks appropriate to your condition and the medications you take, e.g. regular DEXA (bone density) scans for those with significantly reduced mobility or long-term use of corticosteroids (e.g. Prednisolone)

Prescribe medications to protect against known side effects: if you take NSAIDs (e.g. Ibuprofen, Naproxen, Diclofenac) for a short-term problem and this is changed to a long-term regular treatment, your GP might consider prescribing a medication to protect your stomach

Refer you to appropriate specialists: this may be if you develop a new symptom that isn't controlled by standard treatments, if your usual medications stop controlling your symptoms, if you need surgical intervention (or just a surgical opinion) for a problem, or for various other reasons

Liaise with your specialists, following up on recommended treatment or review. It would be lovely if your specialists could all write to each other after every appointment so that they're all in the loop, but in practice this rarely happens. A good compromise is to ensure that you and your GP get copies of all letters and test results so that the responsibility doesn't rest on your memory and medical knowledge to pass information between your specialists

In practice, especially for those of us with complex conditions, it can be very easy to fall through the gaps in the system. Specialist hospitals often consider their role to be that of advisors, leaving the routine follow-up to those more local to the patient. Unfortunately, local hospitals are often scared of complex patients, preferring to assume that specialist overview is all that is required. There isn't really an easy solution to this, apart from taking personal responsibility and asking your GP to do the same.

The final person that I think has a crucial part to play in any chronic illness Dream Team is a psychologist. If you can find one with an interest in chronic illness (or pain, breathing disorders, etc.) that's even better. Living with a chronic illness can be hard. Maintaining healthy relationships with friends and family can seem next-to-impossible if you're unable to cook, eat, walk, or even sit up. Chronic pain, nausea, breathlessness and other symptoms can make one tend to feel antisocial. Psychologists can provide a healthy outlet for feelings of grief and frustration, and can often teach techniques to manage symptoms as well as ways to explain symptoms and prognosis to family and friends.

Psychologists often get a bad rep in this country. I have frequently encountered nurses and doctors who drop their voices when mentioning psychology or psychiatry. I do understand that there's stigma associated with psychiatric illness, but this isn't going to go away if we just pretend it doesn't happen, and even those of us who would consider ourselves to be mentally 'healthy' can benefit from psychological support. If you're offered the opportunity to talk to a psychologist, I would recommend that you jump at the chance, and if you're not offered, don't be afraid to ask.

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.